Thursday, October 28, 2010

Often times trying to get away for a night of fun activities is so difficult to do. Tonight I found a way to have a girl night out. There was a local church here in town hosting a concert by Meredith Andrews. I have been hearing some of her songs on the radio lately and loving them as I have really related to some of the words. When I heard she was coming to town I had to go. This was the first concert for Tristin and Camille both and I am happy to say they both left there with a CD signed by Meredith and they loved the concert.

Music is such a struggle here at the house lately. Tristin is 13 and wants to listen to all the Top 40 Music. I "the mean mean mommy" do not approve of alot of the songs and make her turn it off. I have been trying to get her interested in more Christian artist and I'm hoping tonight was a good step in the right direction.

When she first watch Meredith Andrews on YouTube to decide if she wanted to go see her she said "Mom, she's so pretty" to which I replied "Do you think you can't be pretty and a Christan?". That made both of us giggle but it opened up a great conversation between the two of us.

I feel so caught up in just tending to the twins these days. Their many therapies, feeding them, bathing them, keeping them entertained, that I feel like I'm losing precious time with Tristin right now. As soon as she turned 13 the teenager attitude kicked in. That VERY same day!!! Anytime I can bond with her is a good time. I enjoyed both of my girls tonight. I pray that something may have been said or done tonight to open their hearts more to following the Lord in their days to come. The older they get, the more nervous this mama gets to let them go off and make all their decisions without me. Its scary in one aspect, but exciting in another knowing that I have faith that they have a very bright future ahead of them.

Tuesday, October 26, 2010

When my boys were both born with Down Syndrome it kind of gave me a kick in the butt to share my story with everyone and to really learn what it means to advocate for my kids. Because of this I actually bumped into an opportunity a year and a half ago to become the Executive Director of The Arc of Jefferson County. I was looking to start a support group for parents who had children with Down Syndrome. I called someone from The Arc and she said "Now why would you want to limit it to just Down Syndrome, as parents of children with special needs we all go through alot of the same things." That really struck me. I gave it a thought for a day or two and I couldn't come up with any arguments as to why I would want to limit myself for a support group. We truly do attend more doctors visits, get our children involved with Early Intervention, introduce them to the world of therapies, stress over things we wouldn't if we had healthy children, worry about the future, learn more acronyms than we would have EVER cared to have known in a lifetime in about two years time, and most of all... we seek out those that have been there-done that and hope they can offer encouragement and support.

I accepted the position of Executive Director and have not looked back. I am training to be a parent advocate. To learn the Right and Regulations of parents within the school districts. I am wrapping my brain around the many many support services there are out there and trying to make note of anything that I think I need to know to offer to someone else. I am learning more and more about The Arc and their role as being a leading advocacy group in the United States. I am loving the fact that just by stepping into this position by accident I have a facility already established that I can bring trainings into, hold picnics and playgroups, and help this organization grow. I don't know just how yet, but the possibilities are there, I'm excited about them, and with God's hand it in I pray that people WILL someday know who The Arc is and what they do. I'm still learning myself, but I am happy to be a part of them.

I have just recently also joined forces with The Mentor Parent Program, Inc. I am totally excited about learning about them too. Things are going well. I do need to take a breath and make sure that I am not letting my 5 kids childhood slip away from me because I am being to busy with other things. One mindset, is that I am doing this to improve the lives of our boys.. And the other is being fearful that I won't matter as much in the lives of others like I do in my childrens eyes.. Its a struggle right now, but one that I keep plugging away at until I figure out a schedule that will work for everyone.

I am totally EXCITED that Tom and I are heading to Orlando, Florida to Walt Disney Resort a week from tomorrow to attend one day of The Arc's National Convention so that we can both learn together more about The Arc and grow together in knowledge.

And to think................if I did not have children with Down Syndrome, I would not be a part of these two amazing organizations now would I??

Monday, October 25, 2010

I had to share this article today, its from a local girl, Natalie Bonavita Spencer, whom I've never met before. She grew up here in DuBois yet I have never had the honor of meeting with her. I met her online ironically a few years back. This was posted on her facebook today and she said I was allow to repost on my blog. Her story appears in a book I truly want and need to get soon called Gifts 2 and she is featured on page 77.

In September of 2008, I submitted a story two nights before the deadline. The story was about Greg and I and was for the book Gifts 2: How People with Down Syndrome Enrich the World, edited by Kathryn Lynard Soper. I had Matt and my friend, Adirenne, edit the story via e-mail and submitted my story for hopeful selection into the book. Not too long after, I learned that my story would be included in the book and started the editing process. Just over a year later, Gifts 2 was published, right around Greg's birthday in October 2009. This book, along with the first Gifts book, provide first hand accounts of what it's like to live with someone with Down syndrome, from parents to siblings to educators to friends. Below is the story I wrote for Gifts 2.

I have never known life without Down syndrome. From the day I was born, it was everywhere. When I wanted to play with toys, Down syndrome was there. When I wanted the attention of one of my older siblings, Down syndrome was there. When I went to school, to the baby sitter’s, to the mall, to Grandma’s, Down syndrome was there. But I never saw it.

Gregory Joseph was born in October of 1977; I was born three-and-a-half years later, the sixth and last child to join our family. Throughout my teen and young adult years, each member of the family has told me how they reacted to Greg’s birth and diagnosis of Down syndrome. My mother was able to fully accept Greg within the first few weeks following his birth, while my father admits it took him six months to see beyond the Down syndrome and finally “see” Greg. My four older siblings, who were between the ages of eight and twelve, each reported an adjustment period. I, however, can’t remember when I first realized Greg had Down syndrome. He was always just Greg.

What I do remember is having a brother who would play Barbie’s with me and watch the movie Annie with me over and over, singing along with all the songs. I was the member of my family best able to understand Greg’s “language” and would often interpret what he said for the rest of my family. He may have looked and sounded different to the outside world, but not to me. His tongue sliding out of his mouth when he was concentrating or tired; the “W” position he sat in, with each leg bent at the knees and each foot touching its corresponding hip bone; his full-body laugh, which prevented all sound from escaping and left only a big smile and a shaking body—these were all parts of Greg, not the Down syndrome. I saw him no differently than I saw my older siblings, or how they, in return, saw me.

As I entered my teen years, Greg and I were the only kids at home, as my older siblings had all married and started their own families. I found myself realizing that I didn’t have a typical teen sibling relationship with Greg. I never had to fight for the car, as Greg does not drive. I never had to fight to watch what I wanted on TV, as we both had our own TVs in our bedrooms. I never had to fight for the phone, or the living room when friends were over. There were times I wondered what it would be like to have a “typical” sibling close to my age, but this was my life, and it was okay. Granted, we had our share of times where we bickered, as only siblings can – like over who would get the last Oreo cookie. During these times, Greg would get mad and storm out of the room, only to come back a half hour later with the most somber look on his face, sighing deeply, and saying “No happy. Sorry.” Greg made it easier to let go of some of the teen angst that we all experience. He taught me that it is possible for someone to give a genuine and heartfelt apology, then move on – a lesson I’m still trying to apply today.

Greg also taught me that it is more than okay to accept someone despite how he or she may look or sound. It’s easy to judge a book by its cover, but those who do so may miss out on seeing the person beyond the difference or disability. In our home, we get to enjoy Greg’s tradition of calling our father every April 1st, tell him to look at the snow outside, and yelling “APRIL FOOL’S!!” while giggling. We’re aware of things we normally wouldn’t be interested in, such as WWE wrestling and Power Rangers. We watch Greg get up each morning and independently get himself ready for work, from showering, to dressing, to shaving and packing his own lunch, and finally getting himself on the bus, all the while talking to himself and planning out his entire day for all to hear. We understand that he can find his favorite show on TV at any given moment, despite not being able to tell time. We realize his abilities far outweigh his disabilities.

Now, as an adult early in my career as a speech-language pathologist – a career I wouldn’t have known about or considered without Greg – I appreciate the subtle ways Greg has affected my life. He has shown me how to fully accept people for who they are – something he does very easily. He has taught me that there are many different ways to view a situation and to express yourself. Without me realizing it on a conscious level, Greg has influenced how I view my students, many of whom come to me with limited speech and language skills due to a diagnosis of Down syndrome, autism, or overall developmental delay. I know these children each have many abilities that are known to their parents, siblings, grandparents, and extended family members who love them.

Greg has taught me by example that if you can’t make yourself understood the first way you try, you try another method. This has helped me to help Robbie, who is nonverbal, my height, has the strength of ten of me when he becomes upset, and has autism. Robbie enjoys books and puzzles, and can turn on and navigate through a computer better than most adults I know. He can run faster than I can down the hall and has a great smile. He is an intelligent boy who is learning how to express himself nonverbally. However, he becomes incredibly frustrated and sometimes aggressive when his wants and needs are not met on his timeline. Greg’s speech is fairly unintelligible to the unfamiliar listener, and like Robbie, Greg becomes frustrated when he is not understood after a few tries and will occasionally give up. But more often than not, Greg will take a few seconds and will figure out another way to express what he was trying to say. Through Greg’s living example, I am aware that although Robbie may not be able to tell me what wants using clear, precise words, that doesn’t mean he can’t tell me another way, either using sign language, pictures, or by taking my hand and showing me. When Robbie does this, I see his frustration level decrease, just as I do with Greg when his thought is understood and he looks at us all as if he is thinking, “what was so hard about that to understand?”

Because Greg can’t always tell us what he’s thinking or feeling, some may think he does not understand some of the world around him. My understanding that this isn’t the case has enabled me to help Kiara, who like Robbie is nonverbal. When I first started working with Kiara two years ago, she was very difficult to engage, barely looking at me when I encouraged her to sign “more” or wave “hi.” Kiara was very lax in all areas, physically and cognitively. Then, halfway through my second year working with her, something started clicking. Kiara started establishing eye contact more frequently, interacting with adults on her own for brief periods, identifying vocabulary, and initiating requests for objects she wants by pointing or gazing. She began to imitate some sounds and vocalized more audibly. She would become upset if she couldn’t write her own name. She also showed us she was very interested in how things work: she would make sure a zipper is zipped up fully, and tried to take apart toys if possible. She also had a knowing smile when she is doing something she knows she isn’t supposed to do. Because of Greg, I know that just because Kiara can’t verbally express herself doesn’t mean she’s incapable of understanding when someone’s feelings are hurt, or when someone is mad or sad. Kiara, Robbie, and Greg understand much more than you might think at first glance – just give them time to show you in their own way.

The subtle wisdom Greg has shared with me is truly significant. It has affected not only my life, but the lives of others. Because I grew up learning from Greg and realizing he is much more capable than not, I look for what my students and others in my life can do. I am willing to give my people the benefit of the doubt more readily because of him. I am grateful that my life has always included Greg as my brother, who has taught me so much and influenced my life in so many wonderful and positive ways – some of which I’m just beginning to understand.

********************************************

Natalie lives in Pennsylvania with her husband, Matt. She enjoys her work as a speech-language pathologist. Her brother, Greg, lives in Pennsylvania with his mother and works five days a week. He is planning to move into a group home as soon as possible, and will expect a phone call before visits.

Saturday, October 23, 2010

My days lately have been beyond full and busy.. I would love that have someone smack me upside the head and ask me what was I thinking tearing up the kids bathroom to completely... "completely" remodel it. Everything but the plumbing is being replaced and renewed. I started more than two weeks ago and today my guess is that I still have about a week or so to go to finish everything up. Its not that there is that much work left, its that my daily schedule is so busy that it leaves me no time to work on the bathroom.

I seriously have a 13 year old threatening to move out if I do not get her bathroom back in order. WOW imagine only having one bathroom for the whole family LIKE I DID GROWING UP :)

Today I made progress. Ceiling cleaned and then painted. All the walls primered and wall paper hung on more than half of the walls. I feel good about today but nervous that my next job will be tearing up the floor and laying down another one myself. I smile at myself often thinking that its good sometimes to have spunk like I tend to have. If I want something done, I getter done!!

This also pertains to being a mom to 2 children with special needs and 3 others with typical everyday needs. I don't know how I get everything done that I do. I could absolutely use a clone of myself to try to double my output, but everyone is happy, healthy, and getting all of their basic needs met. We do not do extra things like go out to eat often, goto the movies, or for that matter even hit the mall very much. With a teenager and a 9 year old girly girl... that is not met with alot of complaining.

My Down Syndrome Awareness tip of the day is this: "Raising a child with special needs does take more time and often requires more doctors visits, therapies, and schooling, but I know that taking the time with them now will only provide us all with a brighter future. They are learning independence, social skills, and they are learning that I will offer them everything I have as long as they are happy and gaining new skills. As far as my other children. I pray that they know that they are worth just as much time and effort, but since I don't have any extra minutes in my day, what I do give them is from the heart each and every minute."

Friday, October 22, 2010

(Dedicated to EmmaLee's little pumpkin Toby, who happens to have Down syndrome)

There once was this purple pumpkin named Pete. Unlike any other pumpkin, Pete was purple. Every fall he hoped he would get picked. But every fall he didn’t get picked, he wondered why. He thought, “Sure I might be purple, but you can still carve me and eat my seeds.” The only thing different was his outside. People would look at him and then laugh. Every pumpkin thought that Pete was the kindest, sweetest pumpkin ever! They also wondered why Pete wasn’t getting picked. Now, Pete was getting older and the farmers said that if Pete didn’t get picked this fall, he would have to be thrown away. Pete didn’t want this to happen, so he hoped this fall would be different. Two days went passed and people only looked at him and laughed. Then, the next day, a little girl with a pink tutu and a tiara looked at Pete and said “I want this one.” Pete was so overjoyed. This girl loved Pete the most. Once this girl carved him, she placed him on her porch.That evening, she saw all of the neighbors on her lawn.Hoping they weren’t making fun of Pete, she ran out.Then, she realized what they were all staring at.It was a light brighter than any she had ever seen, shining from within Pete, without even one candle.It was a light that shown from within.Then, people came from far and wide to see this bright, little pumpkin.Just imagine what the world would have missed if Pete were simply thrown away.Even though people may look different on the outside, true beauty comes from within.

Big thanks to EmmaLee for sharing her story with me. Great job!

(EmmaLee is twelve years old. Amazing, huh?)

Leave EmmaLee a comment telling her how much you love Pete the Purple Pumpkin :).

Thursday, October 21, 2010

5 years ago Tristin was 8 years old. She was old enough to know and see the craziness that occurred when the boys were born 8 1/2 weeks prematurely, receiving a Down Syndrome diagnosis within a week and then having one twin develop a life threatening disease rather uncommon in premature babies called Necrotizing Enterocolitis (NEC) and taken 2 1/2 hours away to Pittsburgh Childrens Hospital where he would stay for 12 weeks.

It was a very stressful and unsure beginning. Here is what she remembers and some answers to other questions I wanted to ask her.

Mom: What do you remember most about when the twins were born??
Tristin: I remember seeing them under the purple lights. They were so tiny. Seeing them like this made me both happy and scared. Mom: When we told you they both had Down Syndrome what did you want to know the most?
Tristin: I guess I wondered if they will be able to do all the stuff we do. And I wondered if it was contagious.

Mom: 5 years later, now what do you know about Down Syndrome?
Tristin: They are not that much different. They are still really cute and loveable. They shouldn't be judged by their disability because they are really smart.

Mom: Did you like to learn sign language and do you use it with them much?
Tristin: Yes and Yes. Its weird talking to other little kids younger than my brothers because I end up signing to them too.Like my one cousin Tyler who is 2, I will go up to him and ask him if he wants to eat and I'll sign eat and he looks at me funny. I think its funny!

Mom: Do you get upset with them about anything?
Tristin: Most definitely like any other little brothers. They throw things all the time and make a mess, that makes me mad. Sometimes their humming gets a tad annoying when I'm trying to watch a movie or when we're out in public.

Mom: How does it make you feel when they take up so much of my time?
Tristin: A little jealous.

Mom: When they go to school next year, how do you think they will do?
Tristin: Pretty good. I mean they can't talk yet but they know the alphabet and they are starting to read. They are smart.

Tristin: How do you feel about having twins with Down Syndrome?
Mom: I feel like we were chosen by God to raise these special needs boys. I don't know why? I find it a challenge somedays and a complete blessing others. I also think that by you having brothers with Down Syndrome you are understanding how to have compassion for people and acceptance towards those that are a little different. So not only do I feel blessed to have the twins with Down Syndrome, but I feel blessed to have you learn through everyday life that some people have harder challenges than we do, yet all they want is to be treated the same way we want to be treated. With love and respect.. and you don't know it yet, but your developing a beautiful heart that will get you wonderful things in your lifetime.

Thank you Tristin for you time. I pray that life with the boys blesses you one day and you'll appreciate all the extra work the boys go through to be more like you. They love and admire you... Keep up the great work of being a great big sister :)

Tuesday, October 19, 2010

We have been questioned by several people over the years as to why we would choose to teach the boys sign language instead of focus more on speech. We began signing simple signs to the twins when they were about 10 months old. It took approximately 8 months for us to even get a sign back out of them. Ironically, it was Caleb in the hospital with pnemonia sitting in his crib, and looked at his daddy and signed "Cracker".. He knew what he wanted and he figured it was time to let daddy know what he wanted.

They have never slowed down since that day. Today we estimate they know about 300 signs. The communicate daily with us using sign language. We primarily learned all their signs from an awesome sign language program called Signing Times. Since January of this year we have also been doing the Your Baby Can Read program and there we have had to look up signs on a site called www.aslpro.com. They amaze me and all of their workers at how quickly they mimic new signs and learn them quickly.

This is the best story that I have to share about teaching them sign language.

Tom's grandmother and grandfather were one of the people who could not understand why we choose to teach them sign language. They commented on it almost every time they saw us signing to us, let them talk.. if you teach them to sign they will never want to talk.. things like that. Tom's grandfather passed away in April of 2009. As he was laying terribly ill with cancer about to take his life, we took the kids to see him and love on him one last time before he was unable to recognize them anymore. We sat and enjoyed some cookies that I made as a treat for grandpa and we laughed and we cried. As the kids were all lining up to give grandpa hugs and kisses, it was Isaacs turn to kiss PaPa goodbye. Without prompting he signed "I Love You" to Papa. Grandpa looked at him and then looked at me and asked what he just did. When I said that he just signed I Love You, Grandpa was full of tears and he THANKED us for teaching them to sign. Without that Isaac would have never been able to let PaPa know before he passed that he did indeed love him. It still makes me weepy to tell this story.

We still do not have any words out of the boys. We still hold onto hope that someday they will talk, but if they should never speak a word, I am so happy that they are learning everyday more and more ways to express their feelings and we will continue teaching them sign language until we run out of words. If anyone is on the fence about teaching their child sign language thinking that they will deter them from speaking words, remember that communication in any form is better than none. I have been told and have seen with my eyes, that signing is more difficult that speaking and when the child learns to speak they will mostly likely no longer use the signs anymore.

Monday, October 18, 2010

I am the child who cannot talk. You often pity me, I see it in your eyes. You wonder how much I am aware of -- I see that as well. I am aware of much -- whether you are happy or sad or fearful, patient or impatient, full of love and desire, or if you are just doing your duty by me. I marvel at your frustration, knowing mine to be far greater, for I cannot express myself or my needs as you do.

You cannot conceive my isolation, so complete it is at times. I do not gift you with clever conversation, cute remarks to be laughed over and repeated. I do not give you answers to your everyday questions, responses over my well-being, sharing my needs, or comments about the world about me. I do not give you rewards as defined by the world's standards -- great strides in development that you can credit yourself; I do not give you understanding as you know it.

What I give you is so much more valuable -- I give you instead opportunities. Opportunities to discover the depth of your character, not mine; the depth of your love, your commitment, your patience, your abilities; the opportunity to explore your spirit more deeply than you imagined possible. I drive you further than you would ever go on your own, working harder, seeking answers to your many questions with no answers. I am the child who cannot talk.

I am the child who cannot walk. The world seems to pass me by. You see the longing in my eyes to get out of this chair, to run and play like other children. There is much you take for granted. I want the toys on the shelf, I need to go to the bathroom, oh I've dropped my fork again. I am dependant on you in these ways. My gift to you is to make you more aware of your great fortune, your healthy back and legs, your ability to do for yourself. Sometimes people appear not to notice me; I always notice them. I feel not so much envy as desire, desire to stand upright, to put one foot in front of the other, to be independent. I give you awareness. I am the child who cannot walk.

I am the child who is mentally impaired. I don't learn easily, if you judge me by the world's measuring stick, what I do know is infinite joy in simple things. I am not burdened as you are with the strifes and conflicts of a more complicated life. My gift to you is to grant you the freedom to enjoy things as a child, to teach you how much your arms around me mean, to give you love. I give you the gift of simplicity. I am the child who is mentally impaired.

I am the disabled child. I am your teacher. If you allow me, I will teach you what is really important in life. I will give you and teach you unconditional love. I gift you with my innocent trust, my dependency upon you. I teach you about how precious this life is and about not taking things for granted. I teach you about forgetting your own needs and desires and dreams. I teach you giving. Most of all I teach you hope and faith. I am the disabled child.

Sunday, October 17, 2010

Honestly all of my children are growing up before my eyes and quickly. The twins however are my babies and they will stay my babies for a long time yet. They are shorter than most children turning 5, they are delayed in their learning, they are still in diapers, non-verbal, and still rely on us to feed them daily... SO, I get to enjoy the baby phase so much longer with them. I'm not complaining, I guess I'm sorta bragging. I love the baby phase, I love the toddler phase, and I get to enjoy both of these phases longer with my twins who happen to have an extra 21st chromosome (aka Down Syndrome), than I did with my three typical children before them. This is one of the many blessings I have found with raising children with Down Syndrome. I DO promote independence as much as I can, but there are just things right now that they are unable to do, and I don't mind a bit helping them out while they need me to.

Large gathering are not fun for my twins. They tend to find a quite corner and play there. Tom has a very large family so anytime we have a gathering, its a large one. Today was no different we had just immediate family, (mostly Tom's) and we had 29 people come to the boy's birthday party. They did pretty good, better than previous years. I explained to them all day that it was their birthday and people were going to come and sing to them. I sang Happy Birthday to them about a dozen times before the party just to get them ready and their reaction was still that of the center photo of the collage above. I must admit its quite funny to see them cover their ears and eyes and make everyone feel as though they have the worst signing voice known to man.

So today marks Five years of Twins, Five Years of Down Syndrome, Five years of New Friendships, Five years of networking with other parents online, Five years of life changing views of life, Five years of relying on God to be with me and my husband to guide us in raiseing these children, Five years of Smiles, Hugs, Kisses, total excitment and joy coming from these boys when they see their mommy and daddy. Five years of the boys teaching us way more than we've taught them.

Saturday, October 16, 2010

Today we spent a few hours at Coopers Farms with our church youth group. It was a windy day but overall it was a beautiful fall day to spend outdoors with friends and family. Caleb and Isaac did much better than I expected them to. We even were able to all ride on a rather long hay ride together. I was holding Isaac and he had a little fear at the beginning and threw my glasses off my face. Thankfully, Elijah caught them and held onto them until I was able to calm Isaac. Caleb did really well on the hay ride.

This fall festival has grown alot over the past six or seven years. I remember taking Tristin when she was a preschooler and it was like a hay maze and a few cut outs to get your pictures with and the horse drawn surry rides. It wa alot of fun back then, but boy have they added stuff since I was last there about three years ago. They still have the horse drawn carriage rides, hay mazes and cut outs. Now they have included pony rides, a train made out of barrels pulled by a lawn mower, a long hay ride, a corn maze, face painting, today they had an apple cider press going with sampeling and much more. Its so great to see such a small town like ours having something fun for the kiddos to do and I was happy to see such a good turn out show up. Events like this are a hit or miss as to if we are able to enjoy ourselves AND tend to the boys needs. Today was on the better side. The older three did not get to do everything that they wanted to, but the fact that we were able to spend 2 hours there without a melt down and screaming was a good time.

I am thankful for a great TSS worker - Johnny - who helped me out with the twins today, as Tom was out hunting.

I am thankful for the courage I muster up to take the boys out to events like these knowing that it could end up really good, or really bad.

I am thankful for understanding siblings, who have learned that when the boys are ready to go, we have to go.

I am thankful for the patience God has given me and my entire family. Raising children with special needs is not always easy, but the rewards are far beyond what I can explain.

I am thankful for a church who accepts us in and loves all of my children unconditionally. The twins are very noisey little guys, they hum ALOT and the nice people at my church always say that they think its a blessing to hear little children during the sermon. They say that just hearing them makes them happy to know there are little ones in the church building.

I am thankful for the beauty of the seasons we get to enjoy here in Pennsylvania. Fall is so beautiful, photos cannot capture the beauty and smell we're surrounded by with the leaves turning color and falling like they do here.

I am thankful for those of you who read my blog and comment... Thank YOU!!

Friday, October 15, 2010

Mentally Challenged? Talk to Grumpy.

Snow White’s Dopey…was he mentally challenged?

You’ve seen it, too. The alabaster skin with the shining dark hair. The evil Queen with the really bizarre head wear. The poisoned apple. And don’t forget the adorable little diamond miners—each representing a distinct personality trait or medical condition.

Some of those little men had real problems. Doc, the caretaker, had his work cut out for him watching after the bi-polar twins, Happy and Grumpy. Sleepy had a severe case of either sleep apnea or narcolepsy. The painfully shy Bashful could hardly speak around Snow White. Sneezy was allergic to life, so that counted him out for feeding the chickens or dusting, what with the mold and pollen count and all.

Then there’s Dopey. Loveable, silly ole’ Dopey. When I was a child I never took notice of Dopey, never thought he was weird, or strange, or even out of place. I just figured he was part of this big and wonderful family of woodland folk who loved to sing and dance.

Then I watched Snow White again as an adult, as a parent of a child who was born with Down syndrome. As my children and I were watching this classic, the most amazing discovery dawned on me. Dopey has Down syndrome.

Think about it—he’s smaller then his brothers, evidenced by the clothing that is too big for him. His ears stick out, just like my daughter’s ears. He is non-verbal, just like some people with DS. He always has a sweet smile on his face, and jokes around a lot with his brothers. Sound familiar? He seems to be a little mentally challenged.

And he has the biggest heart in the whole place. The Seven Dwarves would not be complete without Dopey, mentally challenged or not. And here’s something that I find the most interesting of all. Did you notice how much Grumpy loves him?

Yeah, Grumpy. The guy everyone loves to hate. Well, Dopey doesn’t hate him. Dopey loves Grumpy, probably more than you or I will ever know. And Grumpy, although a very grumpy fellow, still needs to be loved just like anyone else.

And that is exactly the point. We need people with Down syndrome around us. They, despite their disability--or maybe because of it--have a huge capacity to love others. They can be really funny, making us laugh when we need it the most. They give hugs freely, without embarrassment. As a whole, they are the sweetest people I know.

Yes, not all people with Down syndrome are sweet, funny, and loveable; after all, they are individuals just like the rest of us. But you know what?

People with Down syndrome are a part of our human family, and they have a place here. They belong. They are individuals of worth with something to offer society that isn’t measured in a typical fashion.

Thursday, October 14, 2010

Today is a day that we have been waiting, and waiting, and waiting for. Back in May we saw a new ENT, Dr. Dohar, at Childrens Hospital in Pittsburgh. He was a very nice doctor who really seemed to know his stuff. We were referred to him by the Down Syndrome Clinic at Children's. They said that he has been treating alot of their Down Syndrome population and we should switch over to him. He decided to have the boys do a sleep study to determine if they suffer from sleep apnea at all due to the very large size of their tonsils. One a good day with no infections or colds the boys tonsils almost touch, they are huge. I thought that alone would be criteria to remove them, but apparently not. We had a sleep study scheduled at the beginning of July, but Caleb broke his femur on June 24th and was totally not sleeping through the night at all, so we canceled both boys. I figured I didn't want one done without the other and risk the chance of having two separate surgery days if they do in fact need to come out. So we held off until the cast came off and here we are.

I have never experienced this before and I am a little nervous based on the stories and photos I've seen of other children having this done. Just all the wires and tape and discomfort.. doesn't look fun. But I am anxious to see the results and think its a needed study. Tom will be in one room with one boy and I in another with the other boy. We check in at 6:30pm, get hooked up, calm them down, lights out by 9:50...hopefully sleep.. study done at 5:30 am, remove wires, check out at 6:30 am. GEESH, sounds like a good time to me!! Part of me is smiling because I have been telling my husband for months that he should in fact get a sleep study done as much as he snores and chokes up while he's sleeping sometimes. Maybe I can persuade the sleep study tech to suggest it to him after tonight too :)

The chore that is cut out for me today is to keep them awake during the 2 1/2 hour car ride to Pittsburgh, we are to try to keep them from napping at all today. Good thing for portable DVD players, they are totally a life saver most days with us. I will sit in the back seat and engage them in the movie and act silly the whole way, so if your driving by and see a crazy woman doing tricks in the backseat today in route to Pittsburgh, honk and wish me luck...

I will update with photos later if I can.

On a side note, I am sitting on the bedside next to the bathroom typing this up while the boys are getting their bath listening to the most joyous sound in the world.... the belly giggles of two brothers playing in the water together. Thank you Lord for today and whatever it may bring!!!

Tuesday, October 12, 2010

My face may be different
But my feelings the same
I laugh and I cry
And I take pride in my gains
I was sent here among you
To teach you to love
As God in the heavens
Looks down from above
To Him I'm no different
His love knows no bounds
It's those here among you
In cities and towns
That judge me by standards
That man has imparted
But this family I've chosen
Will help me get started
For I'm one of the children
So special and few
That came here to learn
The same lessons as you
That love is acceptance
It must come from the heart
We all have the same purpose
Though not the same start
The Lord gave me life
To live and embrace
And I'll do it as you do
But at my own pace

What a catchy saying, this will probably show up on t-shirts all over the world now. Its such a true statement, but I think the only way there is going to be acceptance is if people are more educated. This is what I am hoping to do with my blog, to educate people. To let people into our lives to see that there are difficult times, there are joys like no other, and there is our version of normal that we hope to share with others.

So many of the things that I would classify as "difficult" are medical issues that I did not have to endure with my three older children. Understanding diagnosis's that seem to keep coming each year. Down Syndrome, GERD, Asthma, PDD Autism-NOS, Sensory Integration Dysfunction, Hypothyroidism. In five short years I have developed quite a knowledge of issues that I never even heard about from friends or family members who had children before I did. "Difficult" is trying not to treat your child any different than you did your typical children, but realizing that they do not comprehend things as well as the other children did at their age. "Difficult" is learning to be patient and accept that Caleb and Isaac will do what they are ready to do ~ when THEY are ready to do it, not when mom is ready for them to do it. It will come, but in their own time. "Difficult" is trying to explain what is Down Syndrome and/or what is Autism in my children, when I am still learning all of this myself. "Difficult" is not being able to think to far in the future without getting fearing the world mistreating or making fun of my beautiful baby boys. "Difficult" is trying so hard to stay positive when things seem to get more and more difficult the older they get.

Joys like no other.. the boys are total joy. Joy in my heart that I didn't know that I could possibly have. Joy in seeing the little things in life matter much much more than they did with my older three typical children. Joy in knowing that we will celebrate childhood even longer with my boys. Joy that we were one of the chosen to raise these beautiful children. Joy that I have laid more on God and he has comforted me and pulled me through some difficult times by providing me with the best family support and the most wonderful friends anyone could ask for. Joy that Down Syndrome is not scary to me anymore. Joy that I have been given the opportunity to serve my local community by being the Executive Director of The Arc of Jefferson County. Joy that I am so very blessed beyond any words I might express on here.

Our version on normal has put many miles on the van lately. Here is an example of the boys week.
Monday: 9am to noon - Stepping Stones (preschool for children with Autism)
12:15 to 2:45 - IU preschool
Tuesday: Speech and Occupational Therapy, an hour session with a 1/2 hour drive each way.
Wednesday: 9am to noon - Stepping Stones Preschool again
Thursday: usually filled with running errands, doctors appointments, etc.
Friday: Speech and Occupational Therapy again

I may be a stay at home mom, but I sure have a good part-time job just running the boys everywhere they need to be. Its been stressful, but when I sit back and go over progress notes with their providers its totally worth it to me to do this for them while I can. When they start school, most of their services will be offered in the school setting and will hopefully cut down on all of my running.

So I will leave with this definition of acceptance:

Acceptance is when a person agrees to experience a situation, to follow a process or condition (often a negative or uncomfortable situation) without attempting to change it, protest, or exit.

ALL people with Down Syndrome have the exact same feelings as you and I do. They want friends, they want laughter, they want love. They need Y-O-U to make that happen.

Sunday, October 10, 2010

Using "People First Language": People with DS should always be referred to as people first. Instead of “a DS child,” it should be “a child with Down syndrome.” Also please avoid calling them a “Down’s child”. Would you ever say "that cancer lady"? Probably not. My twins are little boys first, the DS is a small part of them. They are little boys who happen to have Down Syndrome.

This is a biggie to me and for many other mom's I know. Its also something I truly never thought about until I had my boys. I generally don't correct people when they say it, but in honor of National Down Syndrome Awareness month I thought I would type it up for people to consider. My family and I don't even see the Down Syndrome every day, we see happy little mischievous almost five year old boys who are amazing us everyday at what they do and how much it takes for them to get there, yet never complaining only trying extra hard to please us. They deserve to be looked at as "little boys".

Saturday, October 9, 2010

Everyday is a busy day as a mom to five children. There is ALWAYS something going on. Today I woke up at 7am, grabbed me a cup of joe and headed off to the kids bathroom to tear down some wallpaper. I got it in my mind about three weeks ago that I wanted to remodel their bathroom. We have been in this house for five years now and I've wanted to do this since day one.

So here goes nothing. I'm doing the project pretty much solo, except for replacing the vanity light which I hope my husband will help with. So I'm nervous yet excited all at the same time. I am hoping to get it done in a weeks time. Here is the wallpaper I have stared at and hated for a long time...

30 years is long enough to have strawberries in the bathroom here at the house... I'll post the new look when its done. The twins are very interested in what's going on. I closed the door and would NOT allow them to see my tearing down wallpaper. I thought that perhaps they might get some hairbrained idea to tear down wallpaper if they saw me doing it :)

My Down Syndrome Tip for today:
Transition is a word that I never thought I would think about so much before having my boys. We transition from early childhood programs to preschool, then we transition from preschool to school aged, we transition from summer programs to school programs, then later in life we will transition from school aged to adult life.. WOW~ thats alot of very complicated and thought provoking transitioning. I'm just so glad to have support from friends who have already been there and done that.

So today, a new transition for us here at the Hanzely Household right now is a NEW UPDATED Looking BATHROOM :)

Friday, October 8, 2010

I am totally cheating today for the 31 for 21 blog. As I was looking around online today I came across this video on the NDSS website. Each year New York Time Square puts on a video of beautiful faces to spread awareness in the month of October. I've been saying this for the past four years now, but next year I'm going to have to submit a photo of the boys for this... Can anyone tell me how??

Thursday, October 7, 2010

For Down Syndrome Awareness Month I find it appropriate to share encouraging quotes I have come across over the past 5 years. This is one of my favorite and one that is so true.

I thought I would have to teach my child about the world, but instead I have to teach the world about my child~~ Unknown

If you are not a parent of a child with special needs you may read it and think eh, yea I can see that. But when your living it, when you have to explain your childs actions almost daily for people to understand what they are doing, it becomes a mission. I don't mind a bit explaining things to people, I almost wish more people would ask more questions.

Here are a few that come to mind:

Did I know before they were born they would have Down Syndrome? No I did not know. They were 9 weeks premature, I found out when Caleb was about 10 days old and I found out about a week after that about Isaac having Down Syndrome as well. Isaac was so tiny, 2lbs 10oz, that they did not want to do a blood draw right away if they could avoid it.

Isaac mad at Caleb so he hits his head

Caleb unsure of his surroundings so he hits his head

Why do they hit their head so much? I have answered this so many times that I truly think this takes the most popular question asked of my guys. They both hit their head with a closed fist, thumb side right above the ear. I can tell you I am not totally 100% sure of exactly why they do this, but from my research and speaking to professionals, I believe it is due to their Sensory Integration Dysfunction. They are seeking input in their head and they hit themselves to provide that input. They do this at any given time. When they are frustrated it happens much, much more. They also literally run at full speed sometimes and slam their head into walls and doors. This is generally done when they are mad about not getting something that they want. I try to have a sense of humor about it. Since they sign to communicate, when people ask my why they do that, I say they are signing that your funny looking and scaring them... LOL I've gotten a few laughs out of that.

Why are they always humming? This to is a sensory issue I believe. Its an auditory stim. They like to hear themselves so they hum. What is a stim? This is taken from Wikapedia: Stimming is a jargon term for a stereotypy, a repetitive body movement that self-stimulates one or more senses in a regulated manner. It is one of the symptoms listed for autism, although it is observed in about 10 percent of non-autistic young children. Common forms of stimming among people with autism include hand flapping, body spinning or rocking, lining up or spinning toys or other objects, and repeating rote phrases.

There are many more, but these are the ones that come off the top of my head. So go ahead.. Do you have any questions?? I will gladly answer them if they are appropriate.

Wednesday, October 6, 2010

Raising identical twin boys both with PDD Autism and Down Syndrome can be a little exhausting sometimes. Today was one of them. They are little tornadoes at my house. I no sooner get one room cleaned up after them and they have destroyed two more. Today was by far the worst poop experience I've ever dealt with.. I'll spare you any details, but know that it easily took me almost an hour to clean up while they were soaking in the tub. I took a 9 minute phone call, dealing with their medical insurance and came in to find them both laughing and having a good time covered in poop!!!

I couldn't and WOULDN'T take photos of todays experience. But I was going through some photos and thought I might share another rather recent experience with you.

After I took the photos and everything was cleaned up and over, I looked back and read the shirts they had on and found if very appropriate to read CAUTION in big letters....LOL

Tuesday, October 5, 2010

The one thing that I have to admit I've totally grown to love are the beautiful almond shaped eyes people with Down Syndrome tend to have. When the boys were born that was the feature that caught the peditrician and nurses attention that my boys may have Down Syndrome. I could not see it. I remember looking at them and looking at them, over and over again, and finally telling the nurse that I just couldn't see it. She said something that I will never forget. She said "Honey, your looking at them through a mothers eyes, and they are perfect to you in every way." AMEN! Now looking back on photos I can see it. I think that it may have been God's plan for me to not see them any different while we were getting to know each other. Now I find it to be one of their most attractive features.

CALEB:

By boys are identical. But I can tell them apart by their eyes. I love love love Isaacs eyes and I call them "Rainbow Eyes". They just make me smile like I do when I see a beautiful rainbow outside after a warm afternoon shower.

Monday, October 4, 2010

My Down Syndrome Awareness tip for today: When someone you know finds out their baby has Down Syndrome. PLEASE do NOT say your sorry. Say Congratulations and share in their moment. If they are sad, encourage them. If they are numb, comfort them. Offer to support them and help them with whatever they need. No need to feel sorry, they may not know it yet, but they just delivered a major BLESSING from God!!!

Sunday, October 3, 2010

We have done it.. We have completed 6 months of using this program with my 4 year old twin boys who happen to have both PDD-Autism and Down Syndrome. Who only communicate via sign language and who have a busier schedule than almost every child that I know. We endured a fractured femur and a SPICA cast for 8 weeks, learning and gaining strength to walk again finally after having the cast off for 5 weeks now, transitioning back to preschool and starting speech therapy with a new rehabilitation facility. Its been a little tough to get the time and energy needed to dedicate to doing volume 4 with the boys. We did, progress has been made again, and we are so VERY HAPPY to have been given the chance to try this out on our boys. They amaze me, they amaze those that we show them off to, they amaze themselves I think :)

Volume 4, however, has proven to be more difficult for the twins. Not because of the vocabulary words introduced, but the speed at which the words flash across the screen. I presume they are able to read them, but they can in no way sign them fast enough to communicate them to us. When shown the words, they can sign them one at a time, but when shown three words, they will only sign one of them. This is another hurdle we face with them being non-verbal. They know well over 250 to 300 signs, but they still don't put them together in sentence form at all. I will continue to use volume 4 with them for another month.

Just for fun, both boys LOVE for me to write words on the magna doodle. They love to show off. They love to learn new words. My husband Tom has even written words down that are not on the flashcards, books, or video and they have signed it right. We were amazed!!!! I think because they watch Signing Times videos as well... these videos teach children to sign with animation, music and sign language BUT they also have the written word on the screen. I believe the boys are learning those words as well now.

I am totally happy with this program. I would totally recommend the program to anyone on the fence about starting it. I plan on continuing with the program and beyond. I thank Dr. Robert Titzer, Ph.D. for coming up with a program that teaches children who are very visual learners to succeed in their reading journey.

Saturday, October 2, 2010

I thought it would be appropriate to blog about things that have changed for me since becoming parents to my identical twin boys both with Trisomy 21 otherwise known as Down Syndrome almost 5 years ago. First of all, its hard for me to even say out loud that they are going to be 5 years old in 15 more days... THAT is incredible to me. But here's the list of things I've put together in honor of October being Down Syndrome Awareness month.

21 Things that have changed for me now that I am a parent of a child with Down Syndrome:

1. I now know more than ever, that God is in control
2. I know that I need my faith
3. I know that I need my family
4. I am finding that I am stronger than I ever thought I could be
5. I know that the twins put smiles on my face each and every day
6. I know that the twins put tears in my eyes for both joy and sorrow
7. I am learning what it means to advocate
8. I fear thinking to far in the future as I don't want to assume anything
9. I know have become an EXPERT at scheduling and they sure keep it full
10. I now know over 300 signs
11. I know what PECS are (Picture Exchange Communication System)
12. I now know my way around Pittsburgh Children's Hospital and how to get there
13. I appreciate internet so much more just to reach out to others for support and knowledge
14. I know what The Arc is and am proud to serve as the Executive Director of our local chapter
15. I know that there are many more "ologists" in the medical field than I have fingers and toes
16. I know that I can relate to any parent with a child with any disability
17. I have learned more acronyms that I would ever care to (TSS, BSC, OT, ST, PT, MT, DS, PDD-Nos)
18. I have learned that not all people with Down Syndrome are always happy. My boys get grumpy, sad, mad, and mean daily.
19. I have learned that people with Down Syndrome are capable of doing so much more than I thought.
20. I have learned that we take way to much for granted. Its so easy for us to do so much that people with Down Syndrome have to work so hard just to do. BUT they learn to do it with smile on their face.
21. I have learned, that I have so much more yet to learn.

My children have Down Syndrome but I expect them to have a wonderful future. They make everyone they come into contact with smile. They amaze so many. They have taught many in their five short years here on earth that they are determined little guys. Non-verbal and all, they let you know. I am one happy mama!!!!